How M.E. has changed my life

Article written for the M.E. Association

M.E. has changed my life both positively and negatively. Don’t get me wrong M.E. is a difficult illness (to put it simply) in so many ways and it has literally turned the plans I had for my life upside down and thrown them away. However and this might sound corny but over the past 11, nearly 12 years it’s been a rollercoaster of a journey and I’ve learnt a lot along the way both about myself and about living a life with a chronic illness/disability and how that has changed me and my life.

Before M.E. I had my whole career planned out but getting ill with M.E. changed those plans and I’m still trying to figure things out and I’m still unsure what I want to do with my life now career wise because of all the barriers I face because of my disability. One way M.E. has changed my life is in the way that it’s given me a voice to share my story and experiences to raise awareness. I’ve worked with M.E. and disability charities doing a variety of opportunities that I otherwise wouldn’t have done if I hadn’t of gotten ill with M.E. I also wouldn’t have started this blog or my YouTube channel too if I hadn’t of gotten ill either. As well as that I wouldn’t have started my fundraising project selling my handmade cards either.

Another thing M.E. has done is make me realise and work out who my true friends are as well as finding true friends. This has both been difficult and deeply painful but also wonderful making true connections when I realise who are the people that matter the most.

I’ve also come to realise that the chronic illness community isn’t for me. At first when I got ill I was really in with the chronic illness community and at the time in some ways it helped me adjust as my life changed into one with a chronic illness. However personally over time I started to see the community a different way and I found it a negative and competitive space at times. Yes I’ve met friends through the community but photos of a hand holding pills, a bag of saline hanging on an IV pole and posts where people were in competition to be ‘the most ill’ wasn't for me. Personally I prefer to raise awareness in a more positive way and in a way that encompasses my whole life; not just the medical me. However I do know that some people find comfort and their place in the chronic illness community so I respect that.

M.E. has also changed me to become a stronger person by challenging me. To handle the bad days, the pain, countless symptoms, extreme fatigue and everything else it’s thrown at me. M.E. has also taught me my limits. There’s this quote that I love:

“There are things that are possible; things that are impossible, but otherwise, I think that within my restrictions anything is possible.”

Getting ill has taken a lot away from me in lots of different ways and aspects but I try to focus now on what I can do each day and within what I can do there is still a lot and I’m thankful for that. I’ve also learnt gratitude since becoming ill and that’s changed me too. I’m grateful more for the small things, like a letter from a friend, my PA making me pancakes, going out to the postbox, time in my garden on my swing seat or enjoying a good book.

My M.E. has also changed my life in other ways too. I’ve grown in confidence; I’ve had to but it’s not always been easy. It’s been difficult at times to accept the deterioration with my health and thus the need for things like mobility aids and care but I’m now a happy ambulatory wheelchair user (with my jazzed up wheelchair) as well as having pretty crutches (who says mobility aids can’t be pretty?!) and care is just something I’ve just had to accept I need. I’m also more confident now to speak up for myself when needed, such as speaking up for my needs.

The ways M.E. has changed my life negatively is the deterioration in my illness over the years which has been hard. I go through big crashes and find a ‘new normal’ then other times I crash and return but there’s always the worry about crashing and having to get used to a ‘new normal’ in which my M.E. has slightly or significantly worsened each time. Other ways M.E. has changed my life is the increase in isolation because I’m not able to be in education or work and all my friends live in other parts of the UK or overseas, I don’t have any local friends and I’m not in a position to meet new people locally either.

So yes M.E. has changed me a lot; I don’t think I’d be the person I am today if I hadn’t of gotten ill. Both in a physical sense in terms of now living with a disability and my life mapping out differently but also what I’ve learnt over the years. The things I learnt about myself and about life, to be more resilient, grateful and stronger etc. as well as to be my own advocate. To work within my limits and remember that within my limits the possibilities of what I can do are endless. There are days when I hate my M.E. (and I have a lot of them) life is challenging; the world isn’t perfect for disabled people and services for M.E. are few and far between as is the knowledge about the M.E. make having this illness difficult to say the least. But in the other ways M.E. has changed my life I’m thankful for all it’s given me, for all the opportunities I’ve done and I’m yet to do and to be and advocate for others with this illness.

Reflections on M.E. Awareness Day

Today I’ve been thinking about the millions of people missing around the world due to this illness, people like myself missing from education, from work and from society. Missing out on getting the degree and career they dreamed of or missing out from catching up with friends over coffee or a meal or holiday with their family and a million other things.

I think of the lack of funding M.E. receives which means lack of research which leads to the lack of effective treatments not yet found as well as understanding into this illness. There’s still so little that professionals understand about M.E. Even now people with M.E. aren’t getting the care they need because doctors and other professionals don’t understand. They see someone so ill with this illness that the can’t sit up, talk or eat and instead they think that the person is mentally ill instead of being ill with very severe M.E. So many people are facing injustice when it comes to our care.

Statistics from The M.E. Association have found that in nearly a third of patients have the most common waiting time for a diagnosis of M.E. which is between 2 and 5 years - I had to wait 4 years for my diagnosis 

Researchers at the University of Southampton have found that 1 in 3 people with severe/very severe M.E. have no access to local specialist services

Access to care shouldn’t be a postcode lottery. Where I live there’s no access to specialist care at all whatever level of M.E. you have. I also think greater access to social care is needed too. Diagnosis should also come sooner and GP’s should understand better on how to manage our care in the community along with community healthcare services: nurses, Occupational Therapists and physiotherapists as well as social workers to bring holistic care to patients. I also think that more professionals need to be aware of the different guidelines* to help them support people with M.E.

Today I’ve also been thinking about those that have lost their life to M.E.; whether they got too unwell or the illness got too unbearable for them. We need to remember and not forget these people. These people show the reality of M.E. and just how severe this illness can become; that M.E. is much more than ‘just feeling extra tired’.

But we won’t be forgotten. I’m determined to be a voice for people with M.E. and though I might be limited by my own experience with M.E. I will do all I can to help raise awareness, fundraise, blog and do opportunities with charities to let the millions be heard.

More about M.E. including my story, videos and links to other organisations

*Guidelines:

• M.E. NICE Guidelines 
• Social Worker guidelines - BASW
• How nurses can better support people with M.E.

A year in my home

Note: when I first posted this post I thought it was move in date but I’d got muddled up as I often do. I actually moved in on the 11th May not the 10th April!

A year ago today I will have been living on my own a whole year. It still feels surreal sometimes that this is my own home and I’m the only one that lives here. 

I’m also not quite sure how I’ve made it this far, I couldn’t have done it without my care team of PAs, carers and nurses and everyone else such as OTs and not forgetting my family especially my Dad. We all need a Dad, someone to do DIY for us or to sound off to or ask for Dad advice. Also on a supportive way my friends, even though they’ve not been here in person they’ve been there virtually on my phone. One friend in particular has really been a rock for me, just someone to talk to, vent to, share my day with and share funny animal videos with etc. we all just need people like that in our life and though she may not be here in person this friend has really kept me going too.

It hasn’t always been easy; it’s difficult living on my own especially on my bad days or on the odd days when my care hasn’t been there but I think I’ve done well and my Dad thinks so too. When I first moved out Dad thought I’d have a lot of ambulances coming out to me (I hate paramedics and hospitals) but I’ve actually only had two ambulances over the past year, one for a bad concussion which I got from falling during a seizure and another for and asthma attack and only the concussion landed me in the Emergency Department. Dad also thought that CareLink would be calling him a lot too to come and check on me but they have only called him once when I had my asthma attack so to my Dad I’m doing and coping much better than he expected.

Slowly this little bungalow is more becoming my home. When I first got the keys I did decorate it but over the past year I’ve changed more and more things to make this place mine. Dad’s renovating the back garden for me which I’m really excited about. I’ve linked in below a tour video of my home that I put up on my YouTube channel, since then there’s been several changes to my my home that I noticed when I watched back over the video like how my bathroom floor has been changed now so something much nicer, I now have a proper makeup mirror in my bedroom at my makeup desk (which has been reorganised) and I’ve added a yellow HomePod on a stand next to my toaster in the kitchen and also the top of my kallax unit in my bedroom has had a change around and a shelf has been put up above my craft desk and my letter rack has been moved to that shelf and I’ve finally changed the seat cover on my rocking poang chair too!

I still haven’t yet found my routine here. I more just go with the flow and try to listen to my body when it’s telling me it’s getting worn out. I had a strict routine when I lived with my Dad and stepmum but here I don’t really think I can have a strict routine as my evening care is always at different times and I have to wait the nurses to come at no fixed time some days etc. plus when I’m feeling up to it I have house jobs to do like tidying up or putting laundry on. These things do tire me out and it does make living on my own difficult. I try to delegate as many tasks as possible to my PAs and carers to save my limited energy levels and this does help and this is partly why they’re here to help me out and to enable my independence and to enable me to be able to live alone.

Despite the challenges and fatigue and everything else from living alone I love it! - “We can do what we want to again”: Moomintroll (The Conscientious Moomins) I love living by my own rules just simple things like being able to change my pjs as often as I want (as it’s me that has the full laundry basket), and being able to choose my own meals, or just being able to do my own thing and do what I want when I want (within reason and when my body permits me to do so as well) and having my own space too. I’m a person that likes solitude and quiet and my own space and being on my own so as much as I love my PAs and carers I do like my time alone (apart from when I’m not well and therefore I’m struggling without the additional support so then I am relieved to see my PAs/carers).

The layout of my little bungalow has also worked out perfectly for my needs. I’m only a few meters from anywhere and it actually works having the kitchen integrated in the front room as it’s less rooms and less walking for me. My housing association have also been great putting in adaptations like grab rails and a fire door and I’ve also got some extra things from my Occupational Therapist. All this means that I can live more independently (especially when I’m on my own) and tasks are made a bit easier for me or things/places are more accessible for me. I didn’t really have much of that at my Dad’s, I didn’t have the grab rails and the stairs were really difficult for me so it’s great to now be on one level in a bungalow. You can’t have everything though, I don’t think there’s a thing as the perfect property; there’s always that one thing and for me the one downside to living here is the parking.

It feels good to now have my assured tenancy; it feels more permanent and solid and like I have a future here and I do see a future for me here and it feels amazing.

Tour my new home

I wrote an article for The Metro!

I’ve just completed my first opportunity as a Storyteller for the disability charity Scope. The opportunity was to write an article for The Metro. At the moment it’s just online but it may go into print in their newspaper but that’s not for definite just yet.

I was asked to write about my extra living costs due to my disability, especially higher utility bills because of medical equipment that needs powering 24/7 and higher grocery bills because I have multiple allergies on top of my every day expenses and how this affects me financially. I also got asked about to write about how the proposed changed to Personal Independence Payments (PIP) would affect me if they were to happen in light of recent announcement.

Read the article on The Metro here.